Assessment of Functions and Functional Activities of the Upper Extremity

The author was born in Rotterdam on the 21 of July 1963 and spent her childhood in Breda and Dordrecht. From 1975 to 1981 she attended Het Christelijk Lyceum (VWO ) in Dordrecht. In 1981 she started medical studies at the Erasmus University Rotterdam and obtained her medical degree in 1988. After this she worked as a resident in the departments of Surgery, Neurology and Rehabilitation Medicine for children. Three years later, in 1992, she started her residency in the department of Rehabilitation Medicine at the University Hospital Rotterdam Dijkzigt; head of the department and trainer Prof.dr. H.J. Stam. The residency consisted of 3 years rehabilitation in the university hospital and 1 year in the rehabilitation centre de Hoogstraat in Utrecht; trainer drs. W. van Haselen. From 1996 onwards, she has been a member of staff of the department of Rehabilitation Medicine at the Erasmus Medical Centre Rotterdam and has also worked, for several years, in the children's hospital Sophia, part of the Erasmus MC. Since 1999 she has been a member of the Concilium of the VRA (Vereniging voor revalidatieartsen) and since 2005 she has served as president of the Concilium. Jetty van Meeteren is married to Paul de Graaff and they have two daughters Anouk (1999) and Kyra (2003).This thesis describes different methods used to measure of functions and functional activities of the upper extremity. In rehabilitation medicine, treatment aims to improve functions, to diminish limitations in functional activities, and to achieve an optimal level of social participation. The International Classification of Functioning, Disability and Health (ICF) published in 2001 by the World Health Organization (WHO) describes the terms functions, functional activities and participation. This thesis is divided into two parts; the first part presents studies investigating measurement of the function of the shoulder and the relation with functional activities. The second part consists of studies that determine relationships between measurements of functions, functional activities of the upper extremity, and participation in young adults with cerebral palsy (CP)

Fatigue Profiles in Patients with Multiple Sclerosis are Based on Severity of Fatigue and not on Dimensions of Fatigue

Fatigue related to Multiple Sclerosis (MS) is considered a multidimensional symptom, manifesting in several dimensions such as physical, cognitive, and psychosocial fatigue. This study investigated in 264 patients with severe primary MS-related fatigue (median MS duration 6.8 years, mean age 48.1 years, 75% women) whether subgroups can be distinguished based on these dimensions. Subsequently, we tested whether MS-related

Learn 2 Move 16-24: Effectiveness of an intervention to stimulate physical activity and improve physical fitness of adolescents and young adults with spastic cerebral palsy; a randomized controlled trial

Background: Persons with cerebral palsy (CP) are at risk for developing an inactive lifestyle and often have poor fitness levels, which may lead to secondary health complications and diminished participation and quality of life. However, persons with CP also tend not to receive structural treatment to improve physical activity and fitness in adolescence, which is precisely the period when adult physical activity patterns are established.Methods: We aim to include 60 adolescents and young adults (16-24 ye

Development curves of communication and social interaction in individuals with cerebral palsy

Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90) using nonlinear mixed-effects modeling. Results: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. Interpretation: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. What this paper adds: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation

Autonomy in participation in cerebral palsy from childhood to adulthood

Aim: To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method: Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12–34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). Results: In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. Interpretation: This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function. What this paper adds: Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V

Physical behaviour is weakly associated with physical fatigue in persons with multiple sclerosis-related fatigue

Background: Fatigue affects 80% of persons with multiple sclerosis and is associated with daily physical functioning. Both fatigue and physical behaviour are multidimensional concepts. Objective: To study the association between the dimensions of physical behaviour and multiple sclerosis- related fatigue. Methods: Cross-sectional analysis of 212 persons with multiple sclerosis. Participants were severely fatigued, with a Fatigue Severity Scale median (interquartile range): 5.4 (4.8-5.9) and were minimally to moderately neurologically impaired, based on the Expanded Disability Status Scale: 2.5 (2.0-3.5), 73% had relapsing-remitting multiple sclerosis. Fatigue was measured by questionnaires (i.e. Checklist Individual Strength, Modified Fatigue Impact Scale), and the dimensions subjective, physical, cognitive and psychological fatigue were distinguished. Physical behaviour was measured using an Actigraph GT3X+, and outcomes were categorized into the dimensions of activity amount, activity intensity, day pattern, and distribution of activities. Results: The physical behaviour dimensions were significantly associated with only the physical fatigue dimension (omnibus F-test: 3.96; df1 = 4, df2 = 207; p = 0.004). Additional analysis showed that the amount of activity (unstandardized beta coefficient (β) = -0.16; 95% confidence interval (CI) -0.27 to -0.04; p = 0.007), activity intensity (β = -0.18; 95% CI -0.31 to -0.06; p = 0.004) and day pattern of activity (β = -0.17; 95% CI, -0.28 to -0.06; p = 0.002) were the physical behaviour dimensions that were significantly associated with physical fatigue. Conclusion: Physical behaviour is weakly associated with physical fatigue and is not associated with other dimensions of fatigue

A lifestyle intervention improves fatigue, mental health and social support among adolescents and young adults with cerebral palsy: focus on mediating effects

Objective: To evaluate the effect of a lifestyle intervention on fatigue, participation, quality of life, gross motor functioning, motivation, self-efficacy and social support, and to explore mediating effects of physical behavior and physical fitness. Design: A randomized controlled trial with intention to treat analysis. Setting: Rehabilitation centers in university hospitals in the Netherlands. Subjects: Adolescents and young adults with spastic cerebral palsy. Interventions: A six-month lifestyle intervention that consisted of physical fitness training combined with counseling sessions focused on physical behavior and sports participation. Main measures: Fatigue, social participation, quality of life and gross motor functioning. Results: The lifestyle intervention was effective in decreasing fatigue severity during the intervention (difference=-6.72, p=0.02) and in increasing health-related quality of life with respect to bodily pain (difference=15.14, p=0.01) and mental health (difference=8.80, p=0.03) during follow-up. Furthermore, the domain participation and involvement of the social support increased during both the intervention (difference=5.38, p=0.04) and follow-up (difference=4.52, p=0.03) period. Physical behavior or physical fitness explained the observed effects for 22.6%, 9.7% and 28.1% of improvements on fatigue, bodily pain and mental health, but had little effect on social support (2.6%). Interpretation: Fatigue, bodily pain, mental health and social support can be improved using a lifestyle intervention among adolescents and young adults with cerebral palsy. Furthermore, substantial mediating effects were found for physical behavior and physical fitness on fatigue, bodily pain and mental health

Physical behaviour is weakly associated with physical fatigue in persons with multiple sclerosis-related fatigue

Background: Fatigue affects 80% of persons with multiple sclerosis and is associated with daily physical functioning. Both fatigue and physical behaviour are multidimensional concepts. Objective: To study the association between the dimensions of physical behaviour and multiple sclerosis- related fatigue. Methods: Cross-sectional analysis of 212 persons with multiple sclerosis. Participants were severely fatigued, with a Fatigue Severity Scale median (interquartile range): 5.4 (4.8-5.9) and were minimally to moderately neurologically impaired, based on the Expanded Disability Status Scale: 2.5 (2.0-3.5), 73% had relapsing-remitting multiple sclerosis. Fatigue was measured by questionnaires (i.e. Checklist Individual Strength, Modified Fatigue Impact Scale), and the dimensions subjective, physical, cognitive and psychological fatigue were distinguished. Physical behaviour was measured using an Actigraph GT3X+, and outcomes were categorized into the dimensions of activity amount, activity intensity, day pattern, and distribution of activities. Results: The physical behaviour dimensions were significantly associated with only the physical fatigue dimension (omnibus F-test: 3.96; df1 = 4, df2 = 207; p = 0.004). Additional analysis showed that the amount of activity (unstandardized beta coefficient (β) = -0.16; 95% confidence interval (CI) -0.27 to -0.04; p = 0.007), activity intensity (β = -0.18; 95% CI -0.31 to -0.06; p = 0.004) and day pattern of activity (β = -0.17; 95% CI, -0.28 to -0.06; p = 0.002) were the physical behaviour dimensions that were significantly associated with physical fatigue. Conclusion: Physical behaviour is weakly associated with physical fatigue and is not associated with other dimensions of fatigue